Eventful Evening

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Marshall decided to spice things up last night.

So much for a quiet night cuddling and watching a movie…

First he hurled his meds all over the both of us. Right after his bath. So we cleaned him up.

Then he broke out in this HUGE, raised patchy rash.

And he rounded out the night with the highest fever he has ever had.

This is the second fever he has had in three days.

It thankfully went away without intervention.

And he went right to sleep until we had to give him another round of meds. And re-check his temp. And check his vitals. And all of the stuff they do in the night here.

So between the worry, the wake ups, and the feedings, Marshall and I are quite tired today.

Here’s hoping things are a bit less exciting today…

Some relief and ample reassurance

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Dr Baird ANNND Dr Friedman were here together this morning.

That was a powerful moment.
 
Especially when Dr Baird tickled Marshall’s feet.  I lost count of how many times I have watched members of the world’s best team engage with this adorable life they have thankfully extended with life saving measures.

When I get overwhelmed with worry here, I remind myself that all things are temporary.   But it is the team’s dedication to preserving not only life but the quality of it that made me set my heart on this place almost one year ago.

As for this morning, Dr Baird can do surgery now if he must.  It isn’t a matter of him being comfortable with the surgery.   It is a matter of doing what is best for Marshall.  The team would rather wait until our little miracle is bigger because waiting yields better long term results. 

So Monday is the cath.  And surgery may follow.  Another ICU stay is inevitable either way. 

And we wait…trying not to worry.

Monday will take care of itself.  The time between now and then will be savored.  And spent cuddling this little man.  Plus Grandma Penny is in town.  And we can now take Marshall to the garden again! (I captured a pic of Marshall enjoying the fountain as I wrote this)!  

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And as I try not to consider the “ifs.”

Like how if cath lab can’t place the stent, Dr Baird will operate next week. 

And if the cath has any negative outcomes, Dr Baird and crew can fix it.

The good news is Michael and I found some relief in the conversation this morning.  And ample reassurance in the skills of Marshall’s team.

And Marshall is happy.  To me, that is everything.  Now to get my big boys here so we all can be happy together.

I miss them so.

Tightrope

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A restless night of sleep doesn’t do much for any of us.  And there wasn’t a whole lot of sleeping for me last night. 

But at least I was awake early so I could spend more time with Marshall ;-). 

There are beds in the ICU so far today.

Soooo

Marshall leaves at noon for the cath.  He has been npo since 8 a.m. but is really happy today.  His smiles & playtime did much to counter the millions of thoughts racing through my mind.

And now he is sleeping in my arms.  So I have seized the moment to deliver the many hugs & kisses people have been sending to him…plus gently planting kisses of my own on his little cheeks. 

Days like today (much like the others) I feel like I am walking a tightrope between hope and fear.  

Please send good thoughts & prayers for Marshall.  Much love and many, many thanks ♡